This week we celebrate Children’s Hospice Week (17 – 23 June 2024), which is dedicated to raising awareness and funds for children’s hospices and the babies, children, young people and their families that they support.
Children’s Hospice Week showcases stories from families that show just how important children’s hospices are for the 99,000 children with life-threatening and life-limiting conditions across the country. The week, which happens each year in June, also celebrates the dedication and compassion of hospice staff and volunteers who offer expert care, comfort, and support.
Short Lives Can’t Wait
We’re also taking advantage of Children’s Hospice Week to echo the recent Together for Short Lives report ‘Short Lives Can’t Wait’ in appealing to the new Government to protect the £25m annual Children’s Hospice Grant beyond 2024/2025 (to include an increase by at least the rate of inflation each year). We would also ask that they commit to investing an additional annual £295m to meet the current funding gap. There are also serious recruitment challenges in our sector so we call for work to be done to secure the next generation of paediatric palliative care nurses by providing training at the early stages of a nurse’s career and navigable pathways into this rewarding specialism from other areas of nursing.
Children’s hospices also need NHSE (NHS England) to provide support to Integrated Care Boards (ICBs) who commission palliative care and to also ensure ICBs distribute the Children’s Hospice Grant. Noah’s Ark is committed to working closely with the ICBs within our catchment area to ensure effective working relationship that benefit the children and families we support.
Our CEO, Sophie Andrews OBE said:
‘The new party in power, whoever that may be, needs to understand and value the work we do in children’s palliative care. We need the Government to commit to a sustainable funding model that ensures we can continue to deliver first-class care to the children and families we support.’
What our support means to a family
We support Sophia and her family. Mum, Lauren Franks, was recommended to approach Noah’s Ark but she wasn’t sure that Sophia would meet our criteria. It was only when Sophia’s pediatrician independently said that she wanted to make the referral that Lauren started giving serious thought to accepting our help and she’s glad she did. She says:
‘It’s just amazing, we access all of our overnight respite care at Noah’s Ark, there is nowhere else in the borough for Sophia to stay, it’s a really special place.”
Lauren also recently spoke at one our events where she said:
‘The Ark has been life changing – there are no other words.’